Eryn likes spending time with her friends, listening to country music, and playing with her dog. She’s even writing a fiction book. She’s a talkative 12-year-old who is full of energy. But her life did not start out this way.
Eryn has a medical condition that became noticeable at 16 months old when she passed out. She was immediately taken to the doctor for screening, and after three months of weekly visits, her condition continued to worsen. She had stopped eating, drinking, and had dry diapers for periods longer than a day. Her legs were swollen to twice their normal size. She was in heart, liver and kidney failure. Eryn was taken to the Emergency Department at Children’s Colorado.
“She was very quiet and did not have much energy. It was one of the most frightening experiences you could ever have in your life,” said Peter, Eryn’s father.
Eryn was diagnosed with a one-in-a-million lung disorder called primary pulmonary hypertension. Evidenced by a super-enlarged heart and extremely high blood pressure this disease is fatal if untreated.
Children’s Colorado is home to one of the world’s foremost PPHN experts who worked with Eryn’s family to create a plan for treatment. Eryn fought through discomfort, severe nose bleeds, blood clotting, and difficulty breathing while she tried several medications to learn what treatment would be most effective for her. Treatment included round-the-clock oxygen, several oral medications taken multiple times per day, and a permanent catheter pumping medication into her heart. She carried the medicine and pump attached to the catheter in a backpack with ice packs to keep the medicine refrigerated. Nurses at Children’s Colorado taught her parents how to mix her medicine, program the pump and care for her catheter.
“Dr. Dunbar Ivy and his team are true miracle workers, and there is no doubt we owe our daughter's survival to their unbelievable dedication to their patients,” said Teresa, Eryn’s mother.
Eryn’s health began to improve and she got her energy back. At 7 years old she was able to switch to oral medication. PPHN is a progressive disease, and Eryn recently resumed intravenous medication. She still endures nosebleeds and side effects from her medication, but she remains a lively seventh grader who keeps busy with her friends and her writing.
“Our family thanks Children’s Colorado for the life of our child,” Peter said. “There isn’t a cure yet for Eryn’s condition, but I know they’re working on it. And we are forever grateful.”